Volume 11, Issue 2 - Barth Syndrome Foundation

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Advisory Board
Michael Schlame, MD, Chairman
Cell Biology & Anesthesiology
NYU School of Medicine
New York, New York
Peter G. Barth, MD, PhD, Emeritus
Pediatric Neurology ��������
Emma Children’s Hospital / AMC
Amsterdam, The Netherlands
Barry J. Byrne, MD, PhD
Pediatric Cardiology
Shands Children’s Hospital
University of Florida
Gainesville, Florida
Gerald F. Cox, MD, PhD
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Children’s Hospital
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Clinical Research, Genzyme Corp.
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Iris L. Gonzalez, PhD
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A. I. duPont Hospital for Children
Wilmington, Delaware
Miriam L. Greenberg, PhD
Biological Sciences
Wayne State University
Detroit, Michigan
Grant M. Hatch, PhD
Lipid Lipoprotein Research
University of Manitoba
Winnipeg, Canada
Richard I. Kelley, MD, PhD
Division of Metabolism
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Johns Hopkins University
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Colin G. Steward, FRCP, FRCPCH, PhD
Pediatric Hematology
Royal Hospital for Children
Bristol, England
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Pediatric Cardiology
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Ronald J. A. Wanders, PhD
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Academic Medical Center
Amsterdam, The Netherlands
Katherine R. McCurdy - ��������
Board of Directors
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Science Director
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Page 2 Barth Syndrome Journal ~ Volume 11, Issue 2
Letter from the Chairman
By Stephen B. McCurdy, Chairman, Barth Syndrome Foundation
The Barth Syndrome Foundation (BSF) Board of Directors is thrilled to announce
the appointment of Lindsay Groff as Executive Director. Lindsay brings a variety
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marketing, and the perspective of a parent advocate associated with the Children’s
Hospital of Philadelphia (CHOP). We spent months searching for the right person and
are delighted to have found Lindsay. She offers just the right combination of a strong
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experience as the parent of a child who had a major health challenge.
Lindsay holds a Masters in Business Administration
from Rowan University, as well as a Bachelors degree in
Marketing and E-Commerce Technology from Rutgers
University. She and her family live in New Jersey, just
outside of Philadelphia.
Lindsay assumed her new position on October 24, 2011,
overseeing and coordinating the work of the BSF staff,
including Shelley Bowen, Director of Family Services and
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Matt Toth, Science Director. Lindsay will serve on the Board of
Directors as an �����������������
The Barth Syndrome Foundation Board of Directors is also
very pleased to announce its newest Board member — Dr.
David Axelrod. Dr. Axelrod is a Pediatric Cardiologist at the
Lucile Packard Children´s Hospital at Stanford, in Palo Alto,
California. He graduated from Dartmouth College in 1998
and received his M.D. from Ohio State University College
of Medicine in 2002. Dr. Axelrod completed his internship
and residency in Pediatrics at the University of California
in San Francisco and completed his fellowship training in
cardiology (2009) and intensive care (2011) at Stanford.
Although Dr. Axelrod had heard of Barth syndrome earlier, he became more fully aware
of Barth syndrome through meeting Shelley Bowen at a medical conference in 2008,
and shortly thereafter he helped diagnose and care for a Barth patient in California. His
family´s involvement with BSF dates back to 2002 when his then future wife served as a
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Dr. Axelrod brings the insight of a practicing Pediatric Cardiologist, the personal and
professional experience of one who has cared for a Barth syndrome patient and who
holds an important position in a major California teaching hospital to the Board. His
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on the West Coast.
Dr. Axelrod´s term will run through April of 2015.
I know that I speak for the entire Board of Directors in welcoming Lindsay and David to
our Board and into our small but strong and growing community. We are glad to have you
both working with us!
(Photos courtesy of Lindsay Groff and Dr. David Axelrod ~ 2011)